Staggering and Stumbling...
 

:hug: Friend :hug:

It's scary when our bodies seem to have a mind of their own and do the opposite of what we want them to. I know the feeling.

I get this way when the weather changes...or when there's a drop in the barometric pressure. This past week has been a doozy for me. We had really warm weather, storms, then cooler....all in one week. There were several mornings when I could barely walk first thing when I got up. Literally.....I had to hold onto the dresser and then wall-walk into the bathroom. I'm used to having some trouble walking immediately after lying in bed for some time.....but this was totally different. Could the weather changes be causing your problems? Or at least some of it?

I hope you feel better soon. :hug:

You could try stopping the gin on your cornflakes.

Seriously though, that is the flippant excuse I use when I am like that. Temperature increase will do me in everytime - so will fatigue and getting up during the night, oh, and getting out of the car after a longish trip...walking too long or too fast....the list goes on.

Sorry you are feeling so bad. I am just wanting you to know that I get it.

Hugs

Lyn :hug:

Hi Friend2U,

The whole journey when dealing with a chronic or potentially chronic disease is scary to everybody. DO NOT feel like you are alone. You are not, by a long shot. We've all been there or are going through it right now.

It is totally illogical not to have control over that which we have had control all of our lives. Now our body seems to have a mind and life of its own. There is no reason and it is a waste of positive energy and time to even ask, "Why?" The key to survival is to evaluate, adapt, and overcome the challenges as they are presented.

My disease, not MS, has progressed to involve severe involuntary movements of my head, neck, torso, arms and hands. To the point my wife bought me a 1lb. wrist weight to wear so I can better control the computer mouse and eat without throwing food on her or the people around us. Personally, I think the food thing is the real reason.

I never know moment to moment what my body is going to do including simply fall down. Although at restaurants we do charge for a "floor show." OK, just kidding! You got to have a sense of humor and laugh at yourself to relieve your tension and those around you who don't understand.

In our family the motto is, "Just go with the flow." It makes life so much easier. You may try and fight it, but soon you realize that too is a waste of positive energy better spent elsewhere.

Your are in the right place because we know and understand. You are in my thoughts and prayers.

Peace be with you,

It could be the weather partly. I have not had a problem with the weather affecting me too much in the past. But as I seem to be progressing over this last year, it may be that the weather will start playing a bigger role. I hadn't thought of that.

It is scary, as you all know. I appreciate the words of encouragagment from ALL OF YOU! I knew where to come for a shoulder. :)

Kitty, I know what you mean about wall walking... I try to go right and take two steps left. I try to step forward and take a step backward.

Lynn, you have my middle name :). Thanks for letting me know you get it! But, sorry....you have to get it, too.

Craig, most days I have the most positive outlook in the world. Sometimes, like this time, it gets too me a little. As we all know, everytime something weird starts to happen....we can wonder, is this going to be the time it doesn't go back to 'normal'? Thank you for you prayers...I believe in them 200%.

Love you guys!
Friend

I do this at the turn of seasons. esp fall to winter. I get stompy and stumbly with my feet. Its like they just dont want to pick up when I am walking, and I easily drag my toe across door ways and thresholds. As winter settles in, this passes.

I hope you feel better. :hug:

Friend2U,

Would it help to know staggering, walking like you are drunk, having poor balance, is normal with MS and does not necessarily mean you are getting worse.

My neuro told me years ago those with MS walk with a wider stance as a way to compensate for balance -- one day I realized I was walking with a wider stance.

When I was a child I was unable to walk straight, I was constantly walking into family and friends -- everyone kept telling me to walk straight. This has never changed. Yes, I have had MS symptoms since I was a child.

My daughter who is almost 19 told me not too long ago she had numerous friends ask her if I was drunk or why was I was I coming to school functions drunk. She only explained my staggering/drunk walk to those she was close to otherwise she gave them a dirty look and moved on (that's my daughter :rolleyes:).

Friend2U, I don't walk right and it doesn't look pretty but I AM still walking. I have started using trekking poles many times when I am out doing things. The trekking poles have been great for my balance problems as well as helping with endurance.

You could always try PT for your balance, some have found it to be quite helpful.

You bet we are and with you every stumbly step of the way..:grouphug:

F2U,
Make sure you are not getting sick. I have the flu and a UTI. I am tripping, falling over, and wish I was drunk so I would not feel so crappy. But then I guess a hangover would follow.

Vent away, we all do when we feel we need it, and it helps. Do you use a cane? The weather has been very drastic lately. That never helps us.

We all understand. I hope it passes for you or get a check up. Feel better.:hug:

On days like that I wear my t-shirt that says
"I do the MS Walk everyday"

I need a t-shirt like that!

I was picking up a prescription one day and went inside because I needed to get a couple of other things, too. I lost my balance while standing at the pharmacy counter and stumbled a little before I regained my balance. There was a lady waiting with her daughter and I saw them exchange a look....and then the mom made a "drinking from a glass" signal to her daughter. I saw it and it really hurt my feelings that someone would just jump to that conclusion. Plus, it was only about 10 AM! I quietly walked up to her and said that I had seen her motion to her daughter the "drinking" signal and that I had not been drinking...I had MS and my balance was affected by it. Her daughter looked mortified and went and sat in a row of chairs waaaaaay at the other end of the pharmacy counter! The lady was flustered but managed to say "oh, I know someone with MS and it's a terrible thing to have". She offered no apology....nothing. I didn't say anything else to her - she had done enough damage all by herself and didn't need anymore help from me. :rolleyes: People can be so ignorant. :mad:

LOL! I saw a man wearing a t-shirt that said "Keep staring. I might do a trick!". I don't know what ailment he had.....but the shirt was funny!

I have the Ermma Bombeck personality that seems to find utterly funny-like when I go falling into the walls or I "plan"to move forward but my bady falls backwards three steps. My family n friends always give the horrified laugh and I'm not sure which I find funnier-their looks of panic or my totally disobedent body!! The good news is that it too will pass-hopefully-usually..and least after 2 to 3 months but then again...its like the weather...changing seasons all the time. Maybe we are all just perfect weather vanes!! LOL

Ah gee...I'm sorry you have to deal with this. Changing seasons have a bad effect on a lot MS'rs, I think I saw an article done on it somewhere recently, too. Maybe on WebMD?
Don't remember the last time I walked normally. I've often said I should take up drinking as maybe that would straighten me out. :D...I keep my cane in the car for any public walking, stumble around the house on my own.
Hoping things improve soon and that you don't worry about it too much! :hug:

Feel better soon F2U..((hugs))

Thinking of you and hoping you feel better soon...

...........http://i30.photobucket.com/albums/c3...cs/bighugs.jpg

There have been many, many times when I seem to be progressing but my mind and body have bounced back many times. Just think of this as a temporaray setback. I hope you'll feel better soon. :hug:

None of us really knows what our body is going to do, when, or for how long. My position is why stress about it. Maybe I'm just more "seasoned" than many of the people new to this disease and my perceptions of life have changed a great deal also.

Not only do I not walk well even with forearm crutches, I am also very animated with the involuntary movements. I fall down more often now but I make sure not to really share that with my wife if she is not a witness.

There has been talk of getting around in the house. I now have a top-of-the-line power wheelchair made in Sweden I use only in the house. It weighs 280lbs. and completely custom built to my measurements allowing me to get everywhere in the house but the two bathrooms. I use it about 75% of the time. The rest of the time I get around, barely, using my forearm crutches.

My wife says, since my disease has progressed and I try to move short distances without the wheelchair, that she didn't know she was living with a drunk Captain Jack Sparrow. I used to wall walk and furniture bounce. No longer because I can't trust my balance at all. Besides, they decided not to make it an Olympic event so what's the use, right?

So sorry you're in a bad place right now F2U.:( As others have mentioned, the weather could be playing a part since most symptoms get worse when the barometer is falling. Didn't I hear that recently the lowest barometer reading EVER RECORDED happened with the last batch of storms that crossed the country? This is my bad season too. Hope you'll be feeling better soon! :)

F2U,:hug::hug:

You've gotten a lot of advice and hugs on this thread...know that we all hope you are back to being "normal" (whatever that is) real soon.

Thanks for posting this...lots of great advice on it!! I've been dealing with this the past week also, and it's good to read what others said about the change of seasons maybe causing this.

And Craig, you are so great to share your philosophy of life...I treasure it.

Love the tshirt logos!!

And love that you challenged that mom, Kitty...people are quick to judge, which saddens me so.

So, F2U, let us know how you're doing, and take care:hug:

And it's SO much more effective when you nicely challenge them. Sort of takes all the air out of their sails! :cool:

since i still have not started treatment, this is the only way i walk lol(when i am not using my walker). i look like a staggering drunk. i hope once i start some ms meds this will no longer be the case. at least for the most part :)

Thank you all!
 

Thanks to EACH and EVERY one of you for your comments and hugs! I am not glad others are struggling with this as well, but glad that the post has been helpful to others.

I think, as Lady mentioned, I may be coming down with something, the colder weather is giving me a cold and sore throat. So I hope that things will get better soon.

Craig, I looked at your blog for the first time...nice!!! You have a lot of wisdom to share, so glad you are a part of NT.

:hug::hug: to all of you!
-Friend

Hi Friend2U, I hope you are feeling better this week!:)

-emily

I hope the meds work for you. I started rebif in June and I don't really notice a difference. I'm hoping that after a year, no new lesions and maybe a pair of heels. They don't have to be sky scrapers, but any height would do. Good luck with the meds. They now have an oral. I hate injections but rebif has thin needle, 3x a week and an autoinjector. Make sure you do your research and decide whichever is best for you. Goodluck.

Hello All...
 

Just an update....but not much to tell...still not walking well and seem worse rather than better. :( Having lots of burning in my legs now. I haven't called my neuro though...I don't know. I 'think' there wouldn't be much to do. I don't want to take steroids if it is a relapse. I only want to do that if I'm in a lot of pain or completely can't get around. And I can manage to walk what I need in the house with my rollater.

Anyway, just thought I would touch base. Love you guys! :hug:
~Friend

Update since Neuro visit...
 

Went to my check-up today. I am still having the extreme weakness in my legs. He feels at this point it is deterioration caused by progression of the disease itself. It has been getting steadily worse for quite a few months now. He has ordered some physical therapy for my legs. I can have that done about 3 miles from my house, so that is feasible. I am hoping the PT will be good for me.

Just thought I would give you an update.:hug:
Thanks for listening! You folks are some of the few I have to talk to...so thanks!

:hug: I am so excited for you - about the PT ordered by doc and that it's close to home - that helps!

I thought (last year) when I was sent to PT that my doc just "wasn't getting it!" when I talked about not being able to walk or the fatigue etc. Especially when PT was ordered for me.

I couldn't even get the bicycle wheel to go around one time - labored endlessly trying to figure out how to make my legs work right. They had to physically move my legs to make the wheel turn.

So pathetic and embarrassing - especially for me - an ex gymnastic competitor. I was so humiliated.

But I persevered and they were so thorough in helping me to understand which muscles were weak-exercises to strengthen them etc

At the end of 12 weeks I was riding that bicycle 5 miles! And, it felt so good. My leg pains decreased and it just felt good to be fairly functional again.

But, its been the DOG who has gotten me back on my feet and I find the flare ups are not as severe-still slow me down and get stumbly again but not as bad as last year.

PT is a blast and I loved the girls who worked with me and then you get the massage chair and the big Awwwww.

Hope your experience is as wonderful.

It can really help - Go For It!!:winky:

Tresa,
 

Thank you SO MUCH for the encouragement. You give me hope. I trust my neuro completely, and feel he has a good grasp on what I need. So far he hasn't disappointed. I am even MORE hopeful after what you say, that I will be able to see real help! I am so glad it was successful for you!

I'm not sure what activities and excercises they will have. It's a small place so maybe won't have as much available as some places. I should hear something next week. They will be calling me to set up the schedule.

I will keep you updated if you like! Thanks:hug:

Friend2U-Well, don't fret about your PT place not having much equipment becuz if you are like I was - you arent going to be able to use any of it anyway!!LOL.

I couldnt lift weights-not even the 1lb one. Couldnt do exercises like stepping up and down ...I couldnt DO anything - either because of fatigue , loss of balance, muscle atrophy.

Here's the real funny - MY exercise regime was to go home, buy a rocking chair and then rock 1 hour am, noon, and pm. (One exercises legs that way by pushing on toes and heels-is this pathetic or WHAT!) LOL

Yeah, I thought they were teasing me too but they weren't!! THAT was suppose to BE my daily form of exercise!!! Depressing when the reality of my disability had sunk in.

BUT, the next time I went in I told them "No Rocking Chair! I want to do the bicycle thing!" So, laughing, they led me to bike and helped me get up on the darn thing. Not as easy as it used to be, haha.

Well, I couldn't even get my mind to figure out how to get my legs to work or make the wheel go around. So, they had to push my legs the whole time. I was EXHAUSTED after five rounds! LOL

Well, Every day I'd get back on that darn bike even if it meant only six rounds, then7, then 8 until after 12 weeks of serious intense workouts (sometimes it was a mere force of will or some dumb luck that the legs would find their own way to move) but I was up to five miles.

Then I wanted to get on the walking thing a majig. Again, they laughed as if I was being silly and ridiculous. We all roared with laughter when I realized how slow the machine had to go for me to be able to balance myself and walk without falling all over the place.

Again, after 6 weeks I was up to a pretty good five mile walk.

Then I got my dog....and we amble on and on through fields, streams, woods and so much fun. I love the fresh air and feeling the change of the seasons.

So, Friend2U, I dont know where you are with lesions and disability levels but DO IT> It is fun, challenging, makes for a good feeling day even if you only get that one step up and down, or the wheel to turn once. I do hope and pray you will find a new you beneath that layer of MS.

Tresa,
 

This was very inspiring to me...I hope I can get started next week. Haven't heard from them yet, but figured maybe they will call Monday! After what you shared I am very motivated. Thank you! :hug: